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Well – the 75 mg Ampligen dose didn’t last long. It started erasing every bit of progress I had gained on the 50 mg Ampligen dose. So in the middle of week number 30 I cut back again to 50 mg – just in time to catch one of the worst flu bugs I have ever caught in my entire life. 

That bug just held on and on too. I ran a fever from December 29th right through January 4, 2012. As one friend so quaintly put it, “what a way to ring in the new year.” Between the flu, the colds, the bronchitis, the sinus infections and myriads of other little bugs the likes of which I never have caught before I have come to the conclusion that Ampligen is effectively downregulating my immune system.

All these years I thought that my immune system was rather weak. Apparently, not weak enough for the Ampligen’s liking.

Another odd thing that I cannot ignore any longer is the way my nails are growing. They have grown faster, longer, stronger and sharper than ever before. If I do not keep my nails trimmed to the quick I cut myself on them. Before starting Ampligen I have had (maybe) two in-grown toenails in my entire life. I have now had several in a row. I finally have had to go to a podiatrist and have part of the nails removed. (Yes, that was tremendously fun.)

My body also seems determined to react to the Ampligen in varying extremities some weeks based on some as yet unknown factor(s). I have decided to call these mini surges in adverse events “Ampligen tantrums.”

On the other hand I’ve waited a long time to announce with confidence that I can exercise again. Not a lot, but some. I can do 20 minutes of aerobics or a brisk 30 minute walk  every day. Best of all I still have leftover energy to shop, to cook dinner, play with the dogs and even have friends over. After a full day I can expect to do less the next day, but I can still exercise and leave the house. This is truly a remarkable thing for me.  

It has been a long, hard road so far, but a road very much worth taking. I still expect that my body will throw “Ampligen tantrums” every so often, but at least I can now confidently take a 30 minute walk to chill out.

Happy New Year!

Sophie

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I am making progress. I hit two major milestones thanks to Ampligen this week. The first is that I managed to go out to more than one store in a single trip. I made it through three stores in one day! I was out for two hours. I did come home and feel less than stellar, but I did it. With a nap and some Tylenol I was able to have a normal evening without too much increased pain. I was even able to play fetch with the dogs after dinner.

 The other milestone was I was able to make it to church. I didn’t stay for the entire service, but it was the first time I have been in a very long time.  I came home tired, but after a nap and some lunch I have been able to get to work on this blog entry. Pulitzer worthy it is not, but hopefully it is at least coherent!

The bone pain has reduced in severity and duration. I usually have bone pain for about 24 hours after every infusion. 

Nausea is still my constant companion. Occasionally his buddy, the Technicolor yawn, will spend a few hours with me.  

My hair follicles still burn as if each individual hair is on fire, but only for about 24 hours after each infusion (as opposed to constantly when I began the Ampligen). The chemical burning feeling seems to be directly related to Ampligen infusions and hair loss. The more a section of my head burns, the more hair will fall out from that section of scalp.

The main side effect I have had to learn to cope with this week is dreams. What happens when your brain has been wrapped in a velvet cloak of fog for more than two decades? What dreams begin to awaken when the cloak begins to be lifted? And more importantly what the heck can I do about it? 

I know that I have mentioned vivid dreams before in connection with Ampligen, but I never knew dreams could perfectly mimic life right down to the smells and tastes. Dreams are supposed to be images, sounds, sensations, emotions and thoughts experienced while sleeping, but this is almost like living another life. And that life is horrible and frightening beyond imagination.  

Let me make perfectly clear that I do not enjoy violent or scary movies, tv shows or books. If the ending of a book or movie can’t be summed up by the tagline “and they all lived happily ever after,” I usually refuse to have anything to do with it. I haven’t had a tragic or scary real life either. Yet, I have awakened the whole household almost every night this week. I have awakened them with sobs of wrenching despair and piercing screams emanating from sheer terror. Why did I dream things that broke my heart beyond repair? How in the world did I end up running for my life, screaming in terror and soaked in cold sweat? I am not safe whenever I shut my eyes. Dreams stalk my nights and my naps.    

As an added bonus it is nearly impossible to awaken me from one of these new kinds of dreams. When I do awaken, either by being shaken awake by a family member or screaming myself awake I cannot shake off the dreams. I fall asleep and go right back into dreaming where I left off. It is awful to be unable to escape.   

So far I have not found anything to relieve or change the dreams. I can only hope and pray the intensity of these dreams will stop soon. If not for my sake, then for the sake of the other poor, sleepless souls that have to live with me.  

Any suggestions for those of us trapped in Nightmare Land?

Sophie

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